What Arthritis Makes You Lose
At my last medical appointment, my dentist showed me my final treatment plan. It was going to take forever, and sensing my panic, my 20-something student-dentist decided to slowly mansplain how it was a teaching hospital. I’d been a patient for three years, and in the interim, my teeth had further deteriorated. The dentist pointed out that I had several missed appointments—a charge I couldn’t refute. After a lifetime of terrible experiences with dentists, I wasn't inclined to trust them. Their offices were nearly at 34th Street, which felt as far as Maine to me on mornings I felt queasy or weak. So yeah, I'd been there for three years, but actual work done in between cancellations and "teaching" was none.
A carousel of yanked teeth, gum disease, and ankylosing spondylitis
Warm tears streamed down my cheeks as my dentist trainee and an older black woman, his supervisor, held up x-rays I wanted no one to see. She resisted eye contact with me as she brusquely noted that "If [I] wanted, they could save the bottom ones" and explained I'd need to have several rounds of extractions before getting fitted for dentures. Each extraction had to be done in their surgery clinic, crowded on a good day. I imagined this going on and on, a carousel of yanked tooth nightmares.
Disbelief and follow-up
Well, I pondered darkly, my teeth looked how the rest of my body felt. I'd brushed them every day, flossed, had expensive braces--all for naught. I had a great smile, was complimented on it frequently. I inherited it from my mom and enjoyed turning it full megawatt on the unsuspecting. I could hide my pain behind a big smile. I heard other patients chuckling about loose fillings and cleanings. Ordinary. I wanted ordinary. Nope, not me. Dry socket. Gum infection. Dry mouth. A lifetime of scarring dental appointments dropped neatly into place on my emerging ankylosing spondylitis timeline.
I was so shaken after my appointment I briefly forgot my home address for my ride share app. I called my rheumatologist, Dr. K, fast. Had she heard about dental complications with AS or any related diseases? How had arthritis gotten to my teeth? She pointed out that my auto-inflammatory illness had attacked my gums while it settled into my spine. The constant inflammation-likely the cause of earlier, serious gum infections that led to my dentist phobia-along with a binder full of medication side effects had made my teeth brittle, weak, and achy. I couldn't believe AS had found another weak spot to attack.
Dr. K was concerned my dentist hadn't picked up on this issue before it became so dire. Through a wave of nausea and embarrassment, I admitted I hadn’t had a regular dentist in over 10 years. I didn't have insurance as a freelancer, and my city-based insurance sent me to clinics where the only cure for your problem was extraction. Underpaid and overworked staff treated their black, brown, and poor white clients terribly. Sometimes police had to be called, and the energy affected my mood enough that I abandoned my appointments.
Some people are great at lying to themselves. I am not, and over time I would miserably think about my unfinished root canals, the temporary crowns, a couple of long-neglected cavities. But nothing hurt. I can't stress that as a key factor in most health decisions. With chronic pain, I only have enough energy to oil that squeaky pain wheel. I swallowed down my apprehension and concentrated on my lower back pain.
My painful symptoms were my priority
I booked MRIs and ignored toothaches. I called an orthopedist and was dropped as a client by a nightmare dental clinic in Crown Heights. I chipped a front tooth on my first meal in Paris-I ordered the duck well done, the mark of a silly American-and not once did I consider seeing a dentist. For what? I wasn't working, and my minimal insurance covered cleanings and little else. Besides, they were salesmen of a kind, dentists, selling this service and that. So I didn't call a dentist. I did, however, call my neurosurgeon to discuss Botox injections as an alternative to cervical and/or lumbar spine surgery to relieve five pinched nerves.
I did some research online to feel more in control. There wasn't much, as I learned was often the case with AS. In 2018, the Journal of Applied Oral Science detailed recent studies investigating the link between AS and oral diseases, particularly periodontitis, which can lead to periodontal tissue inflammation and gingival bleeding. A 2019 study in the journal Arthritis Research and Therapy suggests that gum disease might also be associated with increased disease activity in people with rheumatoid arthritis (RA).
I saw others were having trouble, too
A quick scan of online health forums painted a more emotional story. Autoimmune forums are chock full of information, but it means first wading through all the voices crying, screaming, begging for a cure of the incurable. Sometimes it's worth the dive. One woman spoke of multiple abscesses that cost her sleep every night. Inflammation of the jaw, stubborn toothaches, and swollen gums were common complaints.
Several people mentioned the blow of needing dentures prematurely-one man had full uppers by age 30 and lowers by age 43. Some could point their decay to specific medications. And the cost to fix all their mess? Quotes for dental surgery ranged from $8,000 to $30,000. When I briefly had cash and saw a wonderful dentist on Central Park West, I knew he could fix the damage fast and well. Then I lost my job and within a year, I gained a life-altering diagnosis.
My research left me confused. This was clearly a common problem affecting many, yet I'd found close to no coverage of it, no public testimonies, no brave before and after photos. Where was the hope, or at least a discussion that could lead to hope? It's too bad, my online friends wrote me. People were too embarrassed to come forward, even for support. In 2020.
Feelings of shame
And yet I deeply understood those feelings of shame, as I had them often. Tooth loss may seem like a cut and dry medical condition, but it's not. Tooth loss is an in-your-face indicator of loss or low status. A sign of poverty, of success or failure. CEOs didn't have cracked teeth. Nor did any of the Ivy League friends I hung out with. When they had health problems, they got them managed quickly with benefits awarded from steady jobs. If I couldn't get my problems looked after, wasn't that proof I couldn't look after myself at all? It was a terrible narrative to tell myself, but you'd be surprised of the tricks shame can pull, particularly when you're already feeling beaten and burdened by painful physical symptoms.
I was devastated, and yet there was no medical leave for me and my bulldozed vanity. I tried-in vain, no pun intended-to convince myself that all of this was superficial and we're all God's children on the inside. Except I had to live in the world during all this convincing. And in my world, I normally smile at bus drivers and neighbors and corner store owners. Now the possible reaction of someone noticing dental issues made me wary, ambivalent. I didn't like that feeling at all.
Fight against the loss
"Insurance won't pay for them," several people in the same dental office chimed when I asked about implants, which are permanent and can support bridges. Medicaid in New York covers the bare minimum, which means restoration wasn't in the budget. Extractions were the only thing in the budget. Recently I got a flyer from my provider saying they would approve implants if proven to be medically necessary. I sighed. Good ol' if proven. I had a disability case in court over pain I was told was unproven. I'd had minimal cash assistance terminated despite a promise of COVID-spurred relief as I hadn't proven hardship.
Along with that, I fought. I fought to get SNAP reinstated, fought to get a lawyer to take my disability case, and I fight always to live a productive life I can be proud of. I've got a long list of fights. Fight is a word I want people with AS to grab onto more often.
I mourn my dental health just as I mourn my "before diagnosis/illness" life. I find it healthy, because vanity or not, it's an extremely personal loss. Meanwhile, I need to get in all my checkups-all the other bits I ignored while solving my 30-year-old lower back mystery. Like a homeowner returning after a storm, I have to go back and survey the damage left behind. It'll take a while to inspect, I've got fight left in me. I hope you do too.
Do you use the word disability to describe your AS?